Memorandum by Dr Paul G Debenham, Head
of Life Sciences and Forensics, Laboratory of the Government Chemist
(LGC) and Managing Director, University Diagnostics Ltd (UDL)

1. Current projects involving collecting genetic
information on people in the UK

We are not actively involved in the collection of
individuals' genetic information in our own capacity or for our
own use. However, as a matter of process within the provision
of our genetic analytical services our confidential records/files
do contain genetic profiles from the UK population. The DNA tests
involved are for minisatellite or microsatellite loci. These DNA
tests are not considered to have any association with medical
or behavioural traits and act solely as an inherited "bar-code"
for the DNA. Three particular areas of our genetic analysis services
are relevant:

 The National DNA Database.
LGC presently acts as a Database processing laboratory for 13
Constabularies in the UK. In this role we receive mouth swabs
(two per person) taken under PACE regulations. These are known
as CJ (Criminal Justice) samples. All our activities in the subsequent
processing of the sample and its paperwork are in accordance with
the Forensic Science Service document GP502. The sample is accompanied
by a simple sample identification form, DNA1, detailing the name
of the provider and some demographics. We convert part of one
mouth swab into a DNA extract that is then analysed to reveal
its genetic profile at 10 microsatellite loci and a sex identification
test. The results are sent by couriered disc to the Forensic Science
Service Laboratory in Birmingham which is the repository of the
National DNA Database. This Birmingham laboratory does all the
"databasing". LGC retains copies of the profiles, DNA
1 forms and remnant swabs and DNA samples for six years according
to GP502. On notification of an individual's acquittal LGC is
required to promptly destroy the DNA 1 form record, all samples
and extracts held and delete the record from our Laboratory Management
Information System;

 DNA Profiles associated with the
Immigration Casework of the Joint Entry Clearance Unit of the
Home Office. UDL provides DNA profiling services for the FCO
to resolve the veracity of claimed relationships between foreign
families and UK residents. The individual details are retained
in confidential paper work files that also contain details of
the profile results obtained. The FCO require the retention of
these files for six years. The profiles obtained are normally
six minisatellite loci, but additional microsatellite tests may
be required to resolve complex relationship questions. DNA extracted
from the blood samples provided is destroyed after three months
and the actual blood samples are destroyed after one year. Genetic
data derived from the samples in the laboratory is retained in
analytical computers, but is only stored by reference to sample
numbers;

 DNA Profiles associated with the
Paternity Casework of the Child Support Agency. UDL provides
DNA Profiling services for the Child Support Agency to resolve
the issue of disputed paternity associated with child support
since May 2000. The individual details are presently held on paper
files, but computer processing of casework details will commence
shortly. The individual details will be retained for one year
after reporting results and blood and DNA samples are destroyed
after three months. The blood samples are just simple pinprick
samples collected as dried bloodstains. The DNA tests used are
normally 14 microsatellite tests and a sex identification test.
These DNA results are not stored in a computerised form with direct
association with the casework files.

2. Why are these genetic Databases being assembled?

The National DNA Database is being assembled
by the Association of Chief Police Officers for the purposes of
crime investigation intelligence. Our role is purely as a production
conduit for the database facility held by the Forensic Science
Service at Birmingham. Our work is paid for by the Constabularies
which send the samples to us.

3. What is the genetic information that is
being collected?

We do not collect genetic data for databases
apart from as anonymous data for reference tables of the frequency
of genetic types. The genetic information that we obtain from
the DNA samples is about the structure of specific minisatellite
and microsatellite sequences in human DNA. These parts of our
DNA contain simple genetic code motifs that can be highly repeated.
The data analysed is a simple numerical derivation of the number
of repeating motifs found within an individual's DNA. In combination
these can create a unique bar-code for an individual's DNA, but
they provide no identification of the characteristics of the individual.

4. How do we see our responsibility to privacy,
consent, future use, public accountability and intellectual property
rights?

We observe strict confidentiality with respect
to any aspect of our casework services included DNA results. We
only disclose technical data-sheets for our paternity and immigration
casework following the written request of the parties involved.
National DNA Database profile data would only be disclosed to
the submitting Constabulary, or the Forensic Science Service upon
written request. The parties we work for establish the consent
for the taking of the samples involved. The genetic identity tests
we perform have no alternative use potential and no IP has been
considered.

Our staff are all employed under strict confidentiality
agreements and relevant sections of the Official Secrets Act where
appropriate.

5. How do you see advances in genetic databasing
developing in the future?

The new class of "pharmacy" genetic
tests known as pharmacogenetics could be most effective if a mechanism
was available to make an individual's data accessible at any surgery,
pharmacy and hospital across the country. Pharmacogenetics is
the study and definition of genetic loci that directly influence
the efficacy of prescription medications. There is growing evidence
that a substantial reduction in adverse reactions, and improvement
in treatment, could be achieved through the customisation of medications
to match the genetic make-up of the individual. Several relevant
gene diagnostics are already technologically available. However
the diagnostic results may be most useful to the individual if
his/her pharmacogenetic profile were to be accessible to doctors,
pharmacists, paramedics etc. Thus a national database of pharmacogenetic
data may well be a very sensible development.

Whilst the technological developments in DNA
diagnostics herald the capability to test for many more genetic
tests at one time, it is to be hoped that genetic tests will only
be performed for the diagnosis required. This will minimise the
concern that unrequired gene test data is collected alongside
that actually requested with the possibility that it is stored
and perhaps accessed at a later date by others without the knowledge
and permission of the donor involved.

The advent of internet-advertised genetic testing
services may result in UK individuals' DNA data being managed
by companies outside of the UK. Such activities would be outside
of any UK regulatory framework.

6. What lessons should be learnt from genetic
database initiatives in other countries?

I am only aware of police databases of varying
equivalence to the UK's national DNA Database. I understand that
by comparison of these it can be established that the broader
the categories of crime requiring genetic databasing the more
effective the database becomes for future crime intelligence.